I am determined to get back in the classroom

7th August 2009 at 01:00
John Dabell's first-hand account of how he recognised the signs of tongue cancer before doctors, and is now beating it

John Dabell had never heard of tongue cancer, let alone thought he would suffer from it. In this first-hand account, the teacher describes how he recognised the signs before doctors, and is beating it

I was diagnosed with tongue cancer on my daughter's second birthday. I remember the day vividly as I got a flat tyre on the way to the hospital. The news was my own personal "Twin Towers moment". Wrapped up in devastation, terror and disbelief, I knew my life would never be the same again.

I first noticed something out of the ordinary in February this year when one side of my tongue inflated like a balloon. I initially dismissed it as a sign that I was a bit run down.

I tried to ignore it and carry on teaching as normal. After all, I had only been at Forest Fields Primary in Nottingham for a couple of terms. A week later, I visited my GP to see what he thought. I was told I probably had a virus and sent on my way.

Week by week my tongue began to change. A reddish patch appeared on the side and two little ulcers formed on the top. I visited the GP again, who thought I might have an allergy and gave me some antihistamines.

I remember thinking it might be something more sinister. I did an internet search and my symptoms seemed to tick every box for tongue cancer. I asked my doctor if he thought my suspicions were correct. My GP said not.

I became obsessed with checking my tongue every break. I didn't mention it to anyone at school because I thought they wouldn't have any sympathy for a few mouth ulcers. Instead I carried on, praying it would disappear.

Teaching suddenly became harder for me. Over one weekend, a lump appeared on the side of my tongue and started to hurt. I found myself struggling to pronounce certain words, almost like I had a lisp. I don't think anyone noticed particularly, but it bothered me.

For the first time in my teaching career, I found it difficult to speak. I knew something was wrong. Every lunch I'd escape to the staff toilets to douse my tongue in Bonjela and pop some paracetamol to get me through the afternoon. It didn't work.

As the days passed, the pain became almost unbearable and it was hard to swallow. Most lunchtimes, I managed a bite of a sandwich and left the rest. I called the GP and asked again: "Do you think it's cancer?" Even though I was told it wasn't, my gut instinct and exhaustive searches on the internet told me otherwise. My GP advised me to visit my dentist if the symptoms did not clear up.

I couldn't get an appointment for two weeks, so I had to wait and wonder. I visited the pharmacist, but drew a blank there too. I started to feel quite unwell. I dragged myself into school every day in agonising pain as the lump on my tongue was getting quite angry.

How I managed to carry on teaching, I will never know. I wish I had gone off sick, but I didn't want a poor attendance record.

Little did I know just how ill I was. I had an advanced cancer squeezing the life out of me and I was exhausted. I'd go home and collapse for a few hours and try to get myself right for the next day. That's not easy when you have a two-year-old. The pain of the tumour changed once more to an unrelenting stinging sensation, like being stung by a bee but multiplied by 10. Painkillers barely touched the sides.

The weeks went by and eventually I saw my dentist. He didn't know what to make of things, so referred me to a maxillofacial consultant, who specialises in conditions that affect the mouth, jaw, face and skull. At last - after seeing three different GPs, a pharmacist and a dentist - I got a diagnosis.

I remember leaving school to visit the consultant during my planning, preparation and assessment time and waving goodbye to my class as they filed in for their Spanish lesson. That's the last time I saw them. I couldn't return to school the next day because I was in too much pain and my mind was in a mess.

I never got to say goodbye to the staff either as my recovery has been beset with infection. It's a strange sensation to be sucked away from your work environment like that.

After a biopsy confirmed that I had cancer of the tongue, plans were made for a 15-hour operation to rid me of the tumour. This was successful, but I lost 75 per cent of my tongue.

To get at the tumour my jaw was broken and my face opened up. The cancer had spread to my neck and so I had to have all my lymph nodes removed. A muscle and skin graft was taken from my left arm to replace the tongue I had lost and plumbed in using the arteries, veins and capillaries of my arm.

It was a delicate, time-consuming and incredibly skilful operation that I think about constantly. I am in awe of what the surgeons at the Queen's Medical Centre in Nottingham did. They saved my life.

After two days in intensive care, I spent two wildly frustrating weeks on the ward. I wasn't able to use my new tongue as there was a lot of healing taking place, which meant all my communication had to be done on paper. I filled notebook after notebook with thousands of questions, thoughts and comments.

During this time, I also had a tracheotomy to help me breathe - my mouth was far too swollen to do the job properly. That meant no eating as well, so a feeding tube was fitted into my stomach and a bag of feed given to me over a 10-hour period every day.

On paper, I was never supposed to get tongue cancer because I'm not at risk. I've never smoked and I don't drink heavily. My diet is good and I lead an active lifestyle. At 40 years old, I'm also about 20 years too young.

Tongue cancer is rare and has a very low profile compared with things such as breast cancer. I had never heard of it. Cervical cancer had Jade Goody to raise awareness. No one famous has ever had tongue cancer.

Still, about 5,000 cases are reported annually in the UK and it has a high mortality rate owing to late detection. It is also on the increase, especially among young women who are smoking and drinking more.

I'm back at home now recovering from the trauma of surgery. I have finished six weeks of aggressive daily radiotherapy and chemotherapy to blast away anything that might still be there. It wiped me out and I still can't swallow but it's doing me good long-term.

I never stop thinking about what has happened to me. No one knows why this has occurred but it has, and I've had to adapt my mindset to cope. I've had no choice.

My motto for this whole experience is: "No one provokes me with impunity", the Latin motto of the Order of the Thistle and the three Scottish regiments of the British Army. It fits because I've been attacked by a foreign body and will defend myself with all my might.

I have a real fight ahead of me to get back into the classroom, but I am determined to make it happen. I'm not able to speak properly yet and struggle to form certain words and sounds - "c", "k" and "g" are particularly challenging. I basically have to learn how to speak again and use my tongue from scratch.

Who would have thought that after 15 years of teaching I'd find it hard to say "cat", when three months ago I was preparing my pupils for their Sats. It's heartbreaking. I have worked as an Inset provider, trained as an Ofsted inspector and written six books, but I have always found myself most at home in a class of 30 children. Hopefully, speech therapy will get me back to where I belong.

I miss teaching because I am dedicated to the job and I can't think of another profession that could offer me so much enjoyment and so many opportunities. I miss playing around with words, reading stories, sharing ideas, explaining things, projecting my voice and just chatting to children, who have always been a constant source of inspiration to me.

I also miss teaching the subjects I have developed expertise in over the years, particularly maths. But being sick has made me a better person, with more courage.

It will also make me a better teacher. I'll have far more understanding of children with speech and language difficulties. When I do return to teaching, it will be like reaching the top of Everest.

The tongue is so integral to all of us, but it's something I've always taken for granted. My cancer came from nowhere and has been described by the professionals as "bad luck", but I need to know why. Someone somewhere will find the cause, if not for me then for others. I am now raising money for the Mouth Cancer Foundation to fund research.

In September, I will be completing a 10K walk in Hyde Park to help raise awareness about oral cancer. It might not seem much considering I did Ben Nevis a couple of years ago, but it's an important goal for me and I'll do it with a drip stand attached if necessary.

My wife and family have been amazing and help me fight with the torment of this condition every day. For the moment, I am still connected to a feed for eight hours a day and it's torture watching everyone else around me eat and talk freely.

Radiotherapy will destroy my saliva permanently and I'll have a dry mouth forever. It's tough, but I'll cope because I have far too much I want to achieve. Although a lot of my taste buds will have been destroyed, I'm determined to eat my Christmas dinner at school. Attitude determines altitude and I'm determined to fly high again.

John Dabell is a teacher at Forest Fields Primary and Nursery School in Nottingham. To support his charity 10K walk, visit www.justgiving.comjohndabell. He told his story to Hannah Frankel.

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